We often get asked questions about what we do, and about PHTS so thought it would be useful to share these, and the answers, for all to see on our website.
Our mission is to fund and facilitate research that will lead to new and better treatments for PHTS. We aim to develop treatments that can relieve the condition’s various symptoms and possibly even reverse or prevent them from occurring in the first place. We hope this work will also lead to improvements in the care of people living with PHTS.
We primarily do this by funding research in universities, hospitals and with other partners, including industry.
In general, we only fund research with Principal Investigators who have qualified with an MD (medical doctors) or a PhD and have an established research programme in a recognised academic or medical institution. Our priority is to work with the most innovative and knowledgeable researchers in PHTS regardless of their geographical location.
We follow a formal review process. Before a decision is made to fund any research, its scientific value is assessed both by external experts (peer review) and our own Scientific Advisory Board. Both these groups work independently of PTEN Research to ensure we work objectively and make sure our funding is put to the best possible use.
As a condition of any funding made by PTEN Research, the information has to be published. This ensures all researchers and ultimately, people with PHTS, can benefit from the work that we fund.
We are committed to funding the most valuable scientific research with the best scientists from around the world, and so we do not have any geographical restrictions. We are currently funding research projects in the UK, USA, Australia and across the EU (including the Netherlands and Spain). We of course welcome applications for funding from UK researchers and institutions, including applications to run clinical trials in PHTS.
Our funding comes from a number of sources, including donations from individuals and interest from investments. We also receive funds from HMRC with respect to Gift Aid that comes from individual donations.
The primary purpose of PTEN Research is to fund research in universities, hospitals and with other partners. It is through research and new discoveries we will create the circumstances and advances for clinicians and people with PHTS to better manage the condition.
Information about PHTS patient advocacy and support groups can be found here.
PTEN Research cannot give any personal or specific medical advice to people with PHTS or their families. You should always speak to your doctor about your condition.
Whilst we are interested in supporting research to understand the use of rapalogs, including everolimus and sirolimus, for people with PHTS, these are powerful medications. Their safety and efficacy have yet to be formally demonstrated in people with PHTS and further clinical trials are needed.
Whilst we provide funding for projects that involve clinical trials we cannot recommend any specific trial.
The decision to participate in a clinical trial is highly personal and you should always discuss it with your doctor first. In addition, all clinical trials use strict formal rules to select who can and cannot participate to both protect the safety of the trial participants and to ensure the results can be meaningfully analysed. Information about how you can get involved in research studies is available here.
You should always speak to your doctor about your condition and how it may affect you. PTEN Research cannot provide any personal or specific medical advice to people with PHTS.
More information about how PHTS is currently managed can be found here.
Links to useful information about PHTS and to patient advocacy and support groups can be found here.
You should speak to your geneticist or doctor about your condition and the best treatment options for where you live. You may also want to request a referral to a doctor who specialises in hereditary cancers to discuss participation in a cancer surveillance programme.